Steve Gets an A+!

Quite a full day today.  It started off with a rockstar parking spot, even better than handicapped!  Sharon R., Bing Crosby, in case you were wondering.

Clinic was running late and we waited a long time.  A lot of news today, here we go:  

• Altman and Dr. Salem (Director of Interventional Radiology) conferred about Steve's CT results from last Wednesday and Dr. Salem feels the two splenic embolizations have achieved the maximum result possible from that type of procedure. 
• Steve did NOT have a bone marrow biopsy today.  We don't think she is in a big hurry to look into the marrow unless his lab numbers stay flat or go down.  Such is not the case at this time.
• His weight was UP again to 162 from 154 last week, hooray!
• His hemoglobin went up to 7.2 from 6.4 yesterday.  He did have a unit of reds at Christ this afternoon.  He had gone 8 days since last receiving red cells, and he has been taking the blood only because he is borderline on counts and we have a set appointment.  More of a safe than sorry attitude, although the elevated ferratin is the other side of the coin......
• His ferratin level (iron from transfusions) is still very high.  No discussion of starting the Exjade.
• Platelets were 58, up about 10% over the past few days.
• WBCs took a BIG jump today, hitting 1.8, with ANCs of 1.1.  That is great!
• Here's a biggie.....the nurses at Christ told him today that his blood type is now changing to Mary's, just in time for Halloween....creepy medical science!!!  When they "i.d.'d " the blood (two nurse safety precaution) today, Steve caught it when they read, "patient is A+, donor is O-"  They also told him the head of Christ Hospital's blood bank was ALL OVER IT.   Thanks, Kim S., for having our backs on this one!  And Happy Birthday to you, too!

Steve, my Mom and I were able to attend Kevin's Fall Band Concert this evening.  It's the first time we've done anything like that in ages.  Had the sweet parking spot at the middle school, love that car placard.   He was really, really tired.  No nap, and sitting from 11 to almost 9, but he did it!  Goodnight!

Jump Around!

Major day of accomplishment here for Steve.  He has dreamed of returning  to Madison, Wisconsin, his favorite place on this entire Earth since his diagnosis on April 30.

HIS Badgers. 

Peck's Market.  

The Firm Worm.  

Wollersheim Winery. 

Bo Ryan. 

The 5th Quarter.  

Observatory Drive.  

Bucky!!

Apple picking. 

Governor Dodge State Park.

  Jump Around!

Mike Leckrone.

  BEER. 

Bret Bielema. 

Avenue Bar. 

Dr. Robert Schilling.

Badger Hockey.

  His friends from Mt. Horeb High School and their SUPPORT.  

But most of all.....State Street Brats. 

He didn't know if he would ever get there again.   

If you've never experienced the "restaurant," it's on the short list in Madtown.  It's a dive, a glorified bar that serves food, specifically BRATS.  Hello?  Such a clever business name!  Imagine!  It has 12" black and red linoleum squares on the floor, clever signs, pretty and nubile waitresses and a fabulous selection of vending machine condoms in the ladies room.  It's one of those places that makes you want to wash your hands after you wash your hands.  But the brats......ahhhhhhhhhhh!!!!....the beer........and WISCONSIN BADGERS EVERYWHERE!!!!  "Beer is the answer, I don't remember the question!" shouts the sign.

Molly got a ride home for the weekend to see Steve and celebrate an early birthday, HOLLAH at cha on Wednesday, Miss B!  One of her gifts was to NOT take the Van Galder Bus back to Madison, so we piled in the car this morning and drove her HOME.  Steve had a pillow and blanket just in case he needed to crash.  He loaded up his meds before we hit the road. 

It was a wonderful day.  Role reversal can be enjoyable.  This time, I drove, he looked out the window, enjoyed the beautiful rural autumnal colors and thought about his future.  We stopped at Molly's dorm for a clean laundry drop, then left for State Street Brats.  It did not disappoint!!!  We ordered red brats, waffle fries, iced tea x 3.  I can't imagine what was going through his head.  

Medically speaking, Steve is doing well, all things considered.  Home health is now here every other day, and the phrase "no news is good news" is truly in effect.  They are tweaking his Tacrolimus (anti-rejection) levels, increasing them to ward off what we think is a good sign:  RASH.  GVHD is here, and it's mild to date, localized to forearms (gone) and lower shins (mild), and non-problematic.  You can't have GVHD without engraftment.  His eyebrows are growing back, and Steve desperately wants his hair back on his head SOON.  When it starts to rain it freaks him out, hahaha.

He is trying to shore up his mental self now, his six-month mark is the 30th.  That's a long time.  Keep those cards and letters coming, kids, we're in it for the long haul.  Meals and house help have been an absolute godsend.  Bless each and every one of you that has kept us going through this nightmare.

Now, a "before and after."  He hates the way he looks.  I understand, boy...do I understand.  However, I feel it will help many of us to forge forward when we can see our goal.  

ON, WISCONSIN!

Good Day!

Steve's CT scan was uneventful.  We had never been in the outpatient facility at 676 N. St. Clair before today. 

It was remodeled in the past year, and that made it nice for both of us.   The patient waiting area had flat-screens and the main waiting room had complimentary Keurig coffee and tea and a great wireless signal.  (Simple things for simple people, I know....)

After the CT, we had our weekly appointment with Dr. Altman and our Stem Cell APN, Donna.  They are VERY pleased with his progress since last week.  Steve looks better, feels better, his labs are more stable, and he is walking unassisted and with better balance.  He is no longer taking potassium, yet his magnesium bounces up and down.  He is taking a lot fewer pills than 3 weeks ago at discharge.  He GAINED weight since last week, too, up to a fluffy 154 pounds from 148.  The scan showed evidence of much infarcting of the spleen, which is great.  The radiologist and Dr. Altman were going to confer later and determine whether or not a third embolization would be in the cards.  She feels that we are going to go into a holding pattern, and will allow his hemoglobin level to go down to 7.0 again before transfusing.  We don't know what "normal" hemoglobin ever was for Steve, and will not know until the organ is removed some day in the future.  As much worrying and complaining as we have done about his spleen, it may have saved his life.  It WAS doing it's job, and that's why it was so enlarged in April.  If he had had it removed years ago, he may have been a goner by the time the leukemia was diagnosed.  Just some food for thought there.  

Home health will be reduced to every other day, which is nice.  He will undergo an ENT and eye exam on Friday, as they will start giving him Exjade, an iron chelator.   Extremely high levels of iron (from many blood transfusions) can cause heart or liver damage.  They will monitor his vision and hearing before and during the Exjade treatment.  I have no idea how long he will be on the drug, and I'm a bit iffy with what I've read about it today.   ::Sigh::

Next week he will have another bone marrow biopsy.  We have requested Dr. Tim or Dr. John Galvin, our old hematology fellow friends.  The last biopsy was the bad one, and Dr. Altman is trying to accommodate us with our preferred practitioners.  This next biopsy will determine how much cellular activity is happening in Steve's marrow.  If it's not much, they will reinfuse him with more of Mary's cells.  (Not all 7.5 million, I asked...probably half.)  If activity is sufficient, we will play the waiting game and probably give him some Neupogen to stimulate white cell production.  

Did someone say, "Let's play Find The Neupogen in the Fridge Game?"  Okay kiddies, here is a recent shot of our refrigerator.  Let's play!  Top shelf?  Nope.  That's a magnesium and potassium rider to the right of the can of dog food leftovers.  Two of those bags fell out and landed on Kevin recently, scaring the heck out of the poor guy.  Second shelf...you are getting warm....left to right...."borrowed" juice cups from the hospital, a bottle of Tacrolimus (anti-rejection drug), fruit punch and garlic, of course...oh wait, the dark bag with the green sticker?  Sorry, that's the Pentamindine (anti-pneumonia) inhalant solution.  Think those two boxes with barcoding are chocolates for this lady of leisure?  If you said, NO, SUE, those are really sharp things in those boxes! you WIN!  Wait, you'll have to pay Uncle Sam tax on $10,000 of prize value.  That's the cost to our insurance company.  It's also what Mary took to stimulate production of stem cells in her peripheral blood.  Mary had 2 courses, Steve has one for home.  That's a lotta moolah.

A sign of huge improvement on the way home, and I'll leave you with this:  We drove through Portillo's on the way home from the hospital and he INHALED a baconburger, Coke, and large fries.   Goodnight!

Another Person, Another Need. Please Help

I received this e-mail today from Deb Hall-Reppen, wife of Steve's brother Rich.  Their son, (our nephew) Tim, needs a kidney transplant. 

Tim Hall-Reppen is a student at Marmion Military Academy in Aurora, IL.    Her words say it all.  Please help if you can.  Thank you so much. 

******************

As many of you know, we found out that Tim's kidneys are failing on September 2nd.  This morning our kidney doctor told us to begin the transplant process.  The good news is that most people have 2 kidneys, and can live with one!  Also, Tim does not have any other health concerns, such as cancer, diabetes, or heart disease.  The transplant coordinator from Rush Hospital asked me if Tim had any people who would be interested in donating.  I have already had some WONDERFUL people step forward to say that they would be willing to donate.  Unfortunately, I know that only 10 people out of 100 are viable donors.  If you are willing to donate, or know anybody who would, please let us know. 

Thank you for your thoughts and prayers.

Love,
Deb

****************

Deb's e-mail address is:  deb.hallreppen@gmail.com

Image THIS (Long Read, Get a Drink)

I'll start out with a quick thanks to those of you who get a little worried when I don't update more regularly and seek out information about Steve from me or family members.  Thanks for reading, and thanks for caring.  Or perhaps thanks for being nosy,  I am!  

Steve has been home three weeks today.  His labs have been "good" with ZERO need for platelets (give a sistah an a-MEN!), hemoglobin is behaving nicely, white cells....hmmmmm.  "Bouncing around" is the new phrase we hear daily.  We have had daily home health nursing visits since discharge.   

WBCs were 1.0 today, ANCs at 0.5, so this makes him pretty borderline neutropenic, hemoglobin was 7.9, platelets at 46.  He had a bag of red blood today, more of a shoring up (at Christ) than anything, and he no longer needs the wheelchair for short walks, so my Mom did a tuck and roll with him curbside while I took Kevin to the dentist.  After clinic last Wednesday he took 2 bags of reds at HIS discretion, and that kept him out of trouble over the weekend.  So really it's getting to be more of a maintenance step than a necessity.

Clinic last week was, ummmm, interesting.  First of all, he was able to park and walk the entire distance from the garage.  A volunteer asked me if I wanted a cup of coffee while we waited in clinic and I was absolutely giddy to have someone wait on me AND I had free hands since we were sans wheelchair.  Amazing how something so simple can bring such joy!  Weigh-in was startling.  He was 148 with Nikes and clothing.  Our APN, Donna, was stunned at another 20-ish pound drop.  He was at 191 at discharge 3 weeks ago.  Steve has named himself "Skeletor."  We are trying to find something funny about this.  Dr. Altman made a beeline to his now svelte ankles that had been cankles for months.  She wasn't alarmed.  She is too cool for words.  

And then, the defining moment of the exam.  "Well, your platelets are doing wonderfully!!" she squealed.  May I ask the teacher a question?  Yes.  How high do his platelets have to be for surgery?  She yelled, "SUE!!!!!"  Sorry, did I just play your best card, Jessica?  She turned to Steve, then to me, and said, "he is good now.  Steve, will you please consider meeting with a surgeon SOON?"  The rest of the conversation was not pleasant.  I am now referred to as "the cheering section."  Another tri-phasic CT scan was ordered for next clinic day, which is tomorrow.

Here is my wording on what the deal is:  After two splenic embolizations, his labs are not where they should be, as far as a trend of improvement.  They do NOT want to risk any loss of progress.  They do NOT want to risk losing the 2nd transplant.  If the spleen is still inhaling cells and has no further room for zapping, they want to remove the organ.  If the spleen still has a good amount of functional tissue, they will embolize him a third time.  Embolizing him is less invasive than laparoscopic surgery.  Steve is hanging on to that spleen like a tightwad hangs on to their Communion money.

On a more cheerful note....Steve's appetite, and I hesitate to reference it as such, is markedly BETTER.  He is starting to load calories, carbs and protein, but with much measured caution.  Brownies are fearful in the house.  He had a Big Mac yesterday, and his sister Mary made the now Internet-famous $5 Dish for us last night.  Thanks, Mary, for cooking, driving out, waiting on us, and cleaning up, such a treat!  He had spaghetti tonight and is also sleeping very well.  Again, who wouldn't with Dilaudid and Ambien??  

He has a consistent amount of back discomfort from splenic infarcting, a good sign, I believe???  The tale will be told tomorrow with his CT image.   

Keep in mind that there is ONE other person in THE WORLD that has/had a "similar" case to Steve's, but not exactly like his case.  Our doctors have reached out to their "thinking community" around the globe...Italy, New York (Sloan-Kettering), etc.  for input and collaborative discussion.  The heads of all five pathology labs at Northwestern Memorial Hospital have been personally involved in Steve's case, as well as the head of the blood banks at NW and at Christ Hospital.  Northwestern has taken a conservative course (embolizations, choice of meds, etc.) when needed, and a more aggressive (HyperCVAD chemotherapy regimen) approach when deemed appropriate.  His leukemia diagnosis has never been firmly established, as it has characteristics of several types, PLUS he has Hereditary Spherocytosis, a type of hemolytic anemia, from birth...the "double-headed monster" coined by our Dr. Tim Huyck.  Steve is alive and progressing to good health.

I am grateful to be able to share this knowledge with all of you, and hope that maybe you will think back to this blog someday for help or assistance if you need it.  You never know if it will be your turn. 

Journey to 100 Days

Steve has been home for two weeks now.  His need for constant blood and/or platelet transfusions has gone down.  He hasn't taken platelets since September 30.  His hemoglobin has been pretty steady, and he took a bag of red cells on Sunday at Christ Hospital.  Dr. Altman has raised the bar up to 8.0 and Steve was at 7.9, so they play a cautious hand and keep his level constant.  White cells are bouncing around, we are told this is normal, but it does concern me.  His WBCs yesterday were 1.3, with absolute neutrophils at 0.8.  No fever, great blood pressure.

He was bloated and miserable during his last stay in the hospital from excess IV fluids.  Since returning home he has lost 20+ pounds of water weight.  His weight is now around 165, down from 220.  He is 6'3."  A lot of weight started coming off before his diagnosis, which we saw with our eyes over a long period of time.  Steve looked ill before April 30, and we wonder at times just how close he cut it by putting off medical attention.

I've been asked to define what "normal" lab levels are, so here you go, according to the ranges that Northwestern uses.  Hemoglobin should be higher for men than women.

White Blood Count  (3.5-10.5)  On April 30, Steve's were 108.0

Hemoglobin (13.0-17.5)

Platelets (140-390)  Remember 5?

Post-transplant patients have a tendency to run low in potassium and magnesium, so we are dosing him heavily with those pills and an occasional IV "mag rider."   The journey to recovery is most often discussed in terms of 100 days from transplant.  We guess we should count from the reinfusion on September 15, so Christmas Eve is Steve's 100th day.  

I've also been asked why I don't blog that he is "better."  I think most people think of better as fine, or well, or healed.  He's not.  And I won't.  You can read the black and white print and interpret that he is improving.  Telling you he's better means that the little help and support we get from others will totally go away.  If my problem is gone, so is yours!!   He looks like holy hell, my kids are all stressed out, and I am spending my days applying for aid and doling out pills.  Better?  Surviving.

Wednesday is Prince Spaghetti, er Clinic Day!

We had an early clinic appointment at The Robert H. Lurie Comprehensive Cancer Center today.  That's the official name, in case there is a quiz.  I can't pronounce Lurie without ooooooooing the "u" and that makes me snicker.  Believe me, there are not a lot of funny things happening on that floor.  We were seen in very prompt order for a blood draw and our appointment with Donna G., the stem cell nurse practitioner, Dr. Altman, and Dr. Mehta.  Steve's labs continue an upward march!  Today his hemoglobin was 9.9 (up from 8.4 yesterday plus one bag of red blood at Christ...."normally" he would only go up a point per bag, so this is another great sign!)  Platelets are at 39 today, up from 30 yesterday.  White cell count was hanging around the 1.7 mark, "lazy" as Dr. Mehta remarked, not a big deal.  He has really white teeth, just sayin.'

Steve's visual appearance changes in the last week were significant enough to illicit comments from his health providers. "You look GREAT!" was heard more than once.  He wore something other than Green Bay Packer sleep pants and an unmatched t-shirt today, which was refreshing for me to see, too.  It must be very rewarding for them to see their patients weather the storm and improve.  I'm sure many patients are not this fortunate.

A bit of wonderful news on the caregiver front, too.  We got to eliminate TWO meds from his daily regimen.  A first!!  Hooray for Steve!!  Hooray for Sue and less Pill Nazi talk!!  One of the drugs has huMONGous pills, 8 a day, so BUH-bye Amicar, and we also eliminated a high blood pressure pill that he started taking when his platelets were so dangerously low and his bp popped.  Again, more John Madden Xs.

I am going to start getting out here and there to refresh and recharge my mental health.  Had lunch yesterday with an old college friend and dinner with Megan in Naperville.  She needed her boots and coats to stay warm on the way to the pool for those 6 a.m. practices, brrrrrrr!!  Also hoping for some interviews.....I love the fall and the energy it brings. 

Things Are Looking Up

Steve has been home a week, we can't believe it.  Labs show steady improvement, most notably his platelets, which hit 30 today.  I sent him into the kitchen to sharpen knives the moment I got that news.  So kidding.  Essentially, without getting transfusions of either red cells or platelets, his numbers are rising.  Dr. Altman said those cells ARE being made, so it appears that Mary's stem cells have taken up housekeeping somewhere....AND the spleen is shutting down.  Halleluja! 

He has been eating juuuuust a bit of food here and there, still no real sign of an appetite.  Steve has also lost 15 or so pounds of water weight from all the IV fluids in the last week.  His magnesium got very low, so we have been giving IV magnesium at home with a pump plus oral meds and that did the trick.  There is so much involvement on our part back and forth with the hospital on the phone that you would not believe it.  His drug chart looks like something John Madden would draw, Xs and Os.  His sleep is sometimes good, sometimes not so good.  In many ways it's like having a baby in the house.  You need to make sure they don't nap too long or they get their days and nights mixed up.  I am hoping to get him to walk a bit outside in the next week, or use our stationary bike to build some muscle tone back.  And it appears that a bit of new hair is sprouting on his head, he never went totally bald, just fuzzy like a penguin chick.  We have clinic tomorrow and hope for a good assessment.

Fill 'Em Up!

I've probably lost most of you with all this talk of cells and lab results.  Today, it's a simple statement:  Steve's numbers are improving, and Dr. Altman, we were told, was surprised and pleased!  The dreaded platelets were at TWENTY, that's right folks, 20, at his draw around lunchtime.  So, I do think the cowboys in Interventional Radiology done shot that spleen.   His hemoglobin was also at 8.4, which was also up from 7.7...and he has not had a bag of red cells since last Tuesday morning.  His white cells are down to 2.3, but Dr. Mehta warned us this number could bump up and down until the second engraftment takes hold.   

We were allowed to use a room in Prentice as a filling station.  Sparky's, not Goober's.  It was great only needing red cells and not platelets.  Stinkin' washed platelets take forever to get!  All told it still took from 10:30 a.m. to 5 p.m. to jump through all the hoops for one bag of blood, and that was with his cross and match still in effect from clinic on Wednesday.  (THAT takes an hour and a half!)  Believe me, we are grateful for all the safety measures and checks and balances put in place by the blood bank, grateful for everyone that donates (shout out to "Double Reds Deb!!!), and for the keen eyes of the director of the NW bank that personally watches out over Steve.

The Boy Scout dinner ran from 4-7....if you know Chicago geography you know that leaving Streeterville after 5 and getting to the dinner was not going to be easy.  Steve wanted to go home and directly to bed.  I couldn't let Kevin down.  As we got close to Oak Lawn, Kevin texted us that the leaders were really hoping Steve made it....so Steve and I made a decision to just go for it.  We called Molly and she met us at Trinity Lutheran Church with our borrowed wheelchair from Trinity (which, I must say, is pretty sweet, it's lightweight, electric cobalt blue, and easy to lift into the car!).  It was something Steve had planned on doing for months, his return to Hollywood!  I was as nervous as a long-tailed cat in a room full of rocking chairs, thinking about all those cooties, uncovered sneezes, but mostly about Steve's energy level and getting overwhelmed.  I had to take a leap of faith with all those pills, and realize most of the meds he takes are preventative, not curative.

He ATE....did you read that correctly??...ATE 4 or 5 pieces of Italian bread, salad with Italian dressing, and "a lot" of spaghetti.  I was flabbergasted.  Just hours earlier at Northwestern, I goaded him into eating some vanilla ice cream from the cup, and even then he agreed to eat it ONLY if I FED HIM.  Clearly, this means we must start dining in crowded restaurants.   I'm going to need a designated driver!

Many people came up to him and were thrilled to see him make the dinner.  That so warms our hearts, and we thank you.  Good night!

p.s.  Please leave a comment if you like. :-D

A Day Off?!

It's true.  Steve and I were home ALL day today, no hospital visits for either of us!  We got some incredibly great news that this morning's blood draw (home health nurse @ 8 a.m.) showed his platelet count jumped to 18!!!  Yesterday's were at 15, and Wednesday's were 5....even though he got one bag of platelets Wednesday and one on Thursday, his count has NEVER gone up like that, so we got to cancel our Blood Center appointment.  Hemoglobin is down a bit, to 7.7, so we bargained with the staff to let us come in to Prentice as an "outpatient" on Saturday for a quick fill-up, which will hopefully only be red cells.  Some more good news, at least I will take it as such, is that his back was sore today when he awoke, especially the left side (spleeeeen infarcting? hmmm?).  There could be a correlation between rising platelet counts and reduction of spleen function.

They are trying to shore up potassium and magnesium levels again today, so he has a large bag of IV fluids and a battery-powered pump at home in a fanny pack.  It's pretty clever!  This way he can be mobile and get what he needs without being tied to an IV stand.  Only thing is, he doesn't have a fanny.

Molly and I did a lot of cleaning, picking up, and work on Steve's web business. So, so much of our home has been neglected and we still have a huge to-do list, but we did get some knocked out and it felt great to have help!!   Molly went to Costco for some items that are appealing to Steve, and we were thrilled to be home for an entire day.  You cannot imagine how nice that felt!!!

Kevin's Boy Scout Troop Spaghetti Dinner is Saturday from 4-7, so I know Steve would love to stop and say hi....let's hope for a great night's sleep and some more baby steps of improvement tomorrow!